Filling the patient-provider knowledge gap: a patient advocate to address asthma care and self-management barriers.

Introduction: In an ongoing study, a new clinical role adapted from a patient navigator called the patient advocate (PA) met with patients before medical visits, attended appointments and afterwards reviewed provider instructions. This qualitative analysis examines the perspectives of PAs and providers regarding their experiences with patients to understand how a PA can help patients and providers achieve better asthma control. Methods: PAs recorded journal entries about their experiences with patients. Provider focus groups and interviews were conducted by researchers and transcribed. Analysis was based on the Grounded Theory approach for qualitative research, using open and then focused coding. Two researchers independently coded these sources until intercoder agreement was achieved. Results: Upon review of 31 journal entries on PA experiences with 24 patients and transcripts from 2 provider focus groups and 12 provider interviews, 5 themes emerged surrounding asthma care and self-management: medication adherence, follow-up, communication, social determinants of health and time. While patients shared with PAs specific socioeconomic barriers to medication adherence and follow-up, providers often did not know about these problems and cited barriers to communication. Time restrictions on medical visits further limited communication. Conclusions: Perspectives reported here illustrate a gap in knowledge and understanding between patients and providers. The PA's unique relationship with patients and presence inside and outside of medical visits allowed them to learn contextual patient information unknown to providers. PAs and providers cited numerous ways PAs can help to improve patient-provider mutual understanding.

A health care navigation tool assesses asthma self-management and health literacy.

BACKGROUND: Self-management of moderate-to-severe asthma depends on the patient's ability to (1) navigate (access health care to obtain diagnoses and treatment), (2) use inhaled corticosteroids (ICSs) properly, and (3) understand ICS function. OBJECTIVE: We sought to test whether navigation skills (medication recall, knowledge of copay requirements, and ability to provide information needed for a medical visit about a persistent cough unresponsive to medication) are related to other self-management skills and health literacy. METHODS: A 21-item Navigating Ability (NAV2) questionnaire was developed, validated, and then read to adults with moderate-to-severe asthma. ICS technique was evaluated by using scales derived from instructions in national guidelines; knowledge of ICS function was evaluated by using a validated 10-item questionnaire. Spearman correlation was computed between NAV2 score and these questionnaires and with numeracy (Asthma Numeracy Questionnaire) and print literacy (Short Test of Functional Health Literacy in Adults). RESULTS: Two hundred fifty adults participated: age, 51 ± 13 years; 72% female; 65% African American; 10% Latino; 50% with household income of less than $30,000/y; 47% with no more than a 12th-grade education; and 29% experienced hospitalizations for asthma in the prior year. A higher NAV2 score was associated with correct ICS technique (ρ = 0.24, P = .0002), knowledge of ICSs (ρ = 0.35, P < .001), better print literacy (ρ = 0.44, P < .001), and numeracy (ρ = 0.41, P < .001). CONCLUSIONS: Patients with poor navigational ability are likely to have poor inhaler technique and limited understanding of ICS function, as well as limited numeracy and print literacy. Clinicians should consider these elements of self-management for their effect on asthma care and as a marker of more general health literacy deficits.

Patient Advocates for Low-Income Adults with Moderate to Severe Asthma: A Randomized Clinical Trial.

BACKGROUND: Few interventions have targeted low-income adults with moderate to severe asthma despite their high mortality. OBJECTIVE: To assess whether a patient advocate (PA) intervention improves asthma outcomes over usual care (UC). METHODS: This 2-armed randomized clinical trial recruited adults with moderate to severe asthma from primary care and asthma-specialty practices serving low-income neighborhoods. Patients were randomized to 6 months of a PA intervention or UC. PAs were recent college graduates anticipating health care careers, who coached, modeled, and assisted participants with preparations for asthma-related medical visits, attended visits, and confirmed participants' understanding of provider recommendations. Participants were followed for at least a year for patient-centered asthma outcomes: asthma control (primary outcome), quality of life, prednisone requirements, emergency department visits, and hospitalizations. RESULTS: There were 312 participants. Their mean age was 51 years (range, 19-93 years), 69% were women, 66% African American, 8% Hispanic/Latino, 62% reported hospitalization for asthma in the year before randomization, 21% had diabetes, and 61% had a body mass index of 30 or more. Asthma control improved over 12 months, more in the intervention group (-0.45 [95% CI, -0.67 to -0.21]) than in the UC group (-0.26 [95% CI, -0.53 to -0.01]), and was sustained at 24 months but with no statistical difference between groups. The 6-month rate of emergency department visits decreased in the intervention (-0.90 [95% CI, -1.56 to -0.42]) and UC (-0.42 [95% CI, -0.72 to -0.06]) groups over 12 months. The cost of the PA program was $1521 per patient. Only 64% of those assigned had a PA visit. CONCLUSIONS: A PA may be a promising intervention to improve and sustain outcomes in this high-risk population if expanded to address factors that make keeping appointments difficult.

Exploring Patient Engagement: A Qualitative Analysis of Low-Income Urban Participants in Asthma Research.

BACKGROUND: Uncontrolled asthma is a common highly morbid condition with worse outcomes in low-income and minority patients in part due to barriers accessing and engaging with health care. We developed a patient advocate to educate about and assist with navigating access to care and provider-patient communication. Participants completed an End of Study Questionnaire (ESQ) that was analyzed to assess experience and engagement with the protocol. OBJECTIVE: This study uses qualitative analysis to evaluate participant experience with the patient advocate and control group interventions. METHODS: The ESQ aimed to prompt an open-ended discussion of study experience. Questions were developed from patient focus groups about the patient advocate intervention (PAI), and were revised based on early responses. The questionnaire was administered after 12 months of study participation: 6 months of control or PAI, followed by 6 months of follow-up. Answers were evaluated using qualitative coding and a grounded theory analytical approach. RESULTS: A total of 102 low-income and minority adults with moderate or severe asthma who had completed the study protocol at the time of publication (approximately one-third of total participants) found PAI and control group activities acceptable. Four themes emerged from both groups: (1) appreciation of interpersonal and educational interaction, (2) perception of improved health care adherence, (3) preparedness for physician appointments, (4) improved patient-provider communication. Attention from study personnel and review of asthma-related information was unanimously well received and empowered patients' active health care participation. CONCLUSIONS: Patient engagement and empowerment were elicited by perceived education and personal attention. This study suggests a low-resource, feasible method to improve patient engagement.

A patient advocate to facilitate access and improve communication, care, and outcomes in adults with moderate or severe asthma: Rationale, design, and methods of a randomized controlled trial.

Few interventions to improve asthma outcomes have targeted low-income minority adults. Even fewer have focused on the real-world practice where care is delivered. We adapted a patient navigator, here called a Patient Advocate (PA), a term preferred by patients, to facilitate and maintain access to chronic care for adults with moderate or severe asthma and prevalent co-morbidities recruited from clinics serving low-income urban neighborhoods. We describe the planning, design, methodology (informed by patient and provider focus groups), baseline results, and challenges of an ongoing randomized controlled trial of 312 adults of a PA intervention implemented in a variety of practices. The PA coaches, models, and assists participants with preparations for a visit with the asthma clinician; attends the visit with permission of participant and provider; and confirms participants' understanding of what transpired at the visit. The PA facilitates scheduling, obtaining insurance coverage, overcoming patients' unique social and administrative barriers to carrying out medical advice and transfer of information between providers and patients. PA activities are individualized, take account of comorbidities, and are generalizable to other chronic diseases. PAs are recent college graduates interested in health-related careers, research experience, working with patients, and generally have the same race/ethnicity distribution as potential participants. We test whether the PA intervention, compared to usual care, is associated with improved and sustained asthma control and other asthma outcomes (prednisone bursts, ED visits, hospitalizations, quality of life, FEV1) relative to baseline. Mediators and moderators of the PA-asthma outcome relationship are examined along with the intervention's cost-effectiveness.